Culture shock: Why do we deny patients open access to their personal medical information?

Israel in RockiesIsrael Amirav is a Program Director and Associate Professor at the Faculty of Medicine, University of Alberta, Edmonton, Alberta

 

 

As a program director at the Faculty of Medicine, University of Alberta, I attended a recent seminar concerning residents coming from other countries to train in our program. People here are trying to design a training program to address the “culture shock” that these residents may face on arrival.

Even if not explicitly stated, the premise of the seminar was that these residents come from an “inferior” culture and thus should learn about and adjust to our “superior” culture. Although this may be true for some aspects of our host culture, particularly those related to scientifically based and clinical medicine, I find this approach too all-encompassing and dogmatic.

Recently, I faced my own “culture shock” associated with a major personal health issue.

I am being assessed for a possible carcinoid tumour — nothing special or unique. Many of us, unfortunately, experience symptoms and end up with a diagnosis of cancer. Some get the diagnosis early; in other cases, there may be delays in arriving at a diagnosis. A recent paper in the BMJ looked at the causes for delay and cited the unfamiliarity of doctors with some of the less common causes. This was not the reason for the delay in my case. I had a blood test for carcinoid marker in April. I was experiencing relevant symptoms that suggested this possibility and became increasingly concerned. Despite numerous attempts to obtain the results, I could not do so. Fortunately, because I am a physician, I was able to access my electronic charts. I was shocked to find out that the result was positive but, surprisingly, I had not been immediately informed.

Patients’ open access to their medical records has been part of my culture for many years. Complete transparency has been characteristic of the practice of medicine in Israel, my home country, and patients can access any of their test results by directly accessing their personal medical record.

Thus, it was a culture shock for me to find out that Canadian patients cannot readily access their own charts. The law is clear: Albertans have the legal right to access their personal health data and records. However, in my view, the interpretation and implementation of this act is absurd: one must call one’s doctor and request results. Having done that, I received a single page containing only a few of the results. Despite asking repeatedly, I received no additional information — in particular, the results relating to the carcinoid syndrome that I suspected might be the underlying cause of my symptoms.

It seems to me very odd that it is not usual practice for Canada’s physicians to be transparent or to share medical knowledge with their patients. To do so would empower patients to become more informed and involved in their own care, thereby improving their adherence and compliance to treatment. The mentality that I have often observed is “we know best what is best for you.” This paternalistic attitude appears to be culturally ingrained in much of the medical profession and the general community.

I was surprised, disappointed and shocked to learn that despite having access to medical records in general, I was not being allowed to examine my own, with the argument that the purpose of the medical record is for patient care and health information is prohibited for uses other than the provision of health services to the patient. This completely ignores the right of the patient to access this information as its owner. The only conclusion to be drawn from such an interpretation and application of the Health Information Act is that I am not allowed to be involved in my own care. It highlights the paternalistic approach that the doctor’s role of providing health services supersedes the patient’s autonomy and access to personal medical information and casts doubts as to the relevance of the act when a patient just wants to view his of her health information without necessarily being provided "health service." Do health services only involve prescribing medication or performing surgery? Is allowing access to my own medical information not one of the simplest services to my health?

… [D]eeply personal investment in the patient’s well-being can motivate a degree of attention to detail and humanistic thoughtfulness that might otherwise be—sadly—lacking. This total commitment to the welfare of the patient has been undervalued in the formulation of ethical guidelines, whereas the assumption that such personalized care would be provided by the health care system has been overcredited. — Frederick Chen, 2001

Although I concur that doctors should not “treat themselves,” there is every reason to involve them, or any patient, in their own care. I would like to know the basis for the restriction on physicians from accessing their medical information. Are physicians perceived by the authorities who created these rules as incapable of participating in our health care management once we become patients? It appears that, in contrast to the intent of the Health Information Act, provincial medical societies can withhold information that should be available to the patient upon request or by accessing their own health records, calling into question the ownership of these records: the patients or their physicians?

Instead of determining how it was possible that a positive test showing a cancer marker was not followed-up, I underwent an audit and had to apologize for accessing my own medical record. Furthermore, I was advised that there is no chance of changing such bureaucracy.

However, I believe that we can and should change these paternalistic policies. I, personally, do not want to adapt to such cultural practices. Surely, we can learn from other cultures and be prepared to re-evaluate our policies.

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